When I’ve not posted for a while It’s usually because I’ve been curled up with pain or wallowing in fatigue, BUT this time I’ve been on holiday in Norfolk with my partner. It is easy to drift apart and holidays are the perfect way to reconnect.

I am inspired to write about the lessons we can learn from geese! Draw your own conclusions.

Sharing a commonality: As each goose flaps its wings it creates “uplift”, an aerodynamic orientation that reduces air friction, for the birds that follow. By flying in a V-formation, the whole flock achieves a 70% greater flying range than if each bird flew alone.

Notice what’s happening: Flying in a V-formation increases the visibility as every goose can see what’s happening in front of them.

Rely on each other: When a goose falls out of formation, it suddenly feels the friction of flying alone. It then quickly adjusts its mistake and moves back into formation to take advantage of the lifting power of the bird immediately in front of it.

Empower each other: When the lead goose in the front gets tired, it rotates back into the formation and allows another goose to take the lead position.

Constant encouragement: The geese honk to recognize each other and encourage those up front to keep up.

Offering support: When a goose gets sick or wounded, two geese drop out of formation and follow it down to help and protect it. They stay with it until it dies or is able to fly again. Then, they launch out with another formation or catch up with the flock.

Staying committed: The geese migration routes never vary. They use the same route year after year. Even when the flock members change, the young learn the route from their parents. In the spring they will go back to the spot where they were born.

For reasons unbeknownst to me, this month my Housing Benefit was over £100 short. I didn’t get a letter that I know of, but I can assume that it’s still the fallout from the cockups made by the various benefit agencies when I briefly went back to work from March to May. Whatever the reason, it’s easy to work out that £670 of rent can’t be paid of £438 of Housing Benefit. So I’m a week in arrears, almost two, as by the time Thursday comes and the next £167.31 is due, there’ll still be nothing coming in. The Income Support went on keeping me afloat, briefly, as did the Child Tax Credit. Now I’m not only in arrears, but last night when I opened my fridge to find some leftover tomato pasta, an onion, and a knob of stem ginger, I gave the pasta to my boy and went to bed hungry with a pot of home made ginger tea to ease the stomach pains.

This morning, small boy had one of the last Weetabix, mashed with water, with a glass of tap water to wash it down with. ‘Where’s Mummys breakfast?’ he asks, big blue eyes and two year old concern. I tell him I’m not hungry, but the rumblings of my stomach call me a liar. But these are the things that we do.

I sit at the breakfast table, pencil and paper in hand, and I start to make a list. Everything that I have was either given to me by benevolent and generous friends, or bought when I earned £27k a year and had that fuzzy memory of disposable income. Much of it has gone already. The Omega Seamaster watch, a 21st birthday present, was the first to go when I left the Fire Service. My words, ‘you can’t plead poverty with a bloody Omega on your bloody wrist’ now ring true for most of my possessions as the roof over my head becomes untenable. My letting agents take care to remind me that I am on a rolling contract, and they can ask me to leave at any time, for no reason. I sell my iPhone for less than a quarter of its original price, and put my SIM in this Jurassic Nokia that I found in a drawer from days gone by.

Tomorrow, my small boy will be introduced to the world of pawnbroking, watching as his mother hands over the TV and the guitar for an insulting price, but something towards bridging the gap between the fear of homelessness, and hanging in for a week or two more. Trying to consolidate arrears, red-topped letters, and bailiffs, with home security, is a day to day grind, stripping back further the things that I can call my own. Questioning how much I need a microwave. How much I need a TV. How much I need to have the fridge turned on at the mains. Not as much as I need a home, and more importantly, not as much as small boy needs a home.

People ask me how I can be so strong. People say to me that they admire my spirit. Days like today, sitting on my sons bed with a friend, numb and staring as I try to work out where the hell to go from here, I don’t feel strong. I don’t feel spirited. I just carry on.

First you turn your heating off. That was in December, it went off at the mains and I parked furniture in front of all the heaters to forget that they were ever there in the first place and alleviate the temptation to turn them on. Then you turn everything off at the wall sockets; nothing on standby, nothing leaking even pennies of electricity to keep the LCD display on the oven. Then you stop getting your hair cut; what used to be a monthly essential is suddenly a gross luxury, so you throw it back in an Alice band and tell your friends that you’re growing it, not that you can’t afford to get it cut. Everyday items are automatically replaced with the white and orange livery of Sainsburys Basics, and everything is cleaned with 24p bleach diluted in spray bottles. You learn to go without things, and to put pride to one side when a friend invites you to the pub and you can’t buy yourself a drink, let alone one for anyone else. There’s a running joke that I owe a very big round when I’m finally successful with a job application, and I know I am lucky to have the friends that I do.

Then you start to take lightbulbs out. If they aren’t there, you can’t turn them on. Hallway, bedroom, small boys bedroom, you deem them unnecessary, and then in a cruel twist of fate, the Eon man rings the doorbell to tell you that you owe £390, and that he’s fitting a key meter, which will make your electricity more expensive to run. So you turn the hot water off. Cold showers were something of the norm in my old flat, where the boiler worked when it wanted to, so you go back to them.

You sell the meagre DVD collection for an even more meagre sum, the netbook, a camera, you wash clothes in basic washing powder that makes your skin itch. You pare back, until you have only two plates, two bowls, two mugs, two glasses, two forks, two knives, two spoons, because everything else feels like an indulgence, and rent arrears don’t wait for indulgence.

In a world where people define other people by their job title (this is Sue, she’s a lawyer, and Marcus, he’s an architect) and by the number plate on the type of cars they drive, and the size of their television and whether it’s 3D or HD or in every room, my world is defined by the love and generosity of my friends, and the contents of my bin shed. You sit on the sofa someone gave you, looking at the piano someone gave you, listening to the radio someone gave you, perched on the chest someone gave you.

Poverty isn’t just having no heating, or not quite enough food, or unplugging your fridge and turning your hot water off. It’s not a tourism trade, it’s not cool, and it’s not something that MPs on a salary of £65k a year plus expenses can understand, let alone our PM who states that we’re all in this together.

Poverty is the sinking feeling when your small boy finishes his one weetabix and says ‘more mummy, bread and jam please mummy’ as you’re wondering whether to take the TV or the guitar to the pawn shop first, and how to tell him that there is no bread or jam.

For me it is the action of “relinquishing self expectation” (thanks Sue) or the practice of doing nothing. It’s also taking (present tense as it’s a learning curve) a long time to accept.

Soooo, what’s wrong with reading a book during the day? Nothing right? you probably do it yourself.

Well actually I mean all day.every day, sometimes interspersed with TV, radio or sleep!

Great you say, bring it on.

However, I’ve been doing this since I was diagnosed with M.E. -4 years now – but not with any commitment to myself or the real Taoist principle , just because that’s what the illness does to me. Most of the time I do want to go out, do stuff and have a life!(Or rather my life back)

A virus for 3 weeks over the holidays, follow by a heavy cold at present, meant I not only couldn’t do anything but didn’t give myself a hard time for it.

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Good News, Sad News and a resolution

There is much to celebrate as we move into 2014: a new, stronger nest platform with improved design is in place, a second webcam is on the cards to provide a panoramic view of the site, and the birds are back despite the cranes and considerable construction activity on the adjacent Jessop East site.

It is sad to report that the young male that was taken into care back in the summer was found dead to the east of Sheffield earlier in the winter, apparently of natural causes. Mortality rates in young Peregrines are high, with somewhere between 50% and 70% of birds failing to make it through their first year. About half of those that die in their first year are thought to succumb to disease or parasitism, and it may well be that the young male suffered from this from an early age, perhaps accounting for his grounding in July, when no injuries were apparent.

Given the many challenges facing the species, we are determined to continue to support the recolonisation of the Sheffield area, although the move of birds into urban settings is a relatively recent phenomenon. The team that built the original platform that proved so successful over the last couple of years tweaked the design to make it even better and had it ready to be put in place by the end of November. Jim Lonsdale gave me a call to come and see it for myself.

Great work by Jim and the small works team in the Department of Estates! The main changes are in the quality of the materials, which are built to last (the previous platform was to test whether or not the site would prove attractive), and a notably deeper lip at the front edge to reduce the risk of young birds dropping out. It’s a very substantial piece of work that should last a decade or more.

To minimise disruption to the site, the old platform was replaced by the new one all on the same day – no mean feat given the weight involved and restricted access up the tower – and all was in place before Christmas. The webcam was retained and was soon showing images of the birds occasionally visiting the platform, although the stream was not ready for public view. There are some tweaks to be had with the camera to give a better view when the birds are on the front of the box, or even the perching pole. As things stand, the view can be tantalising…

On 22 January a flurry of activity over lunchtime saw first the female and then the male on the platform in quick succession, with both busily scraping the gravel. To watch something like this is a rare privilege: the technique is to huddle down and scrape the gravel back with the talons, creating a hollow under the body.

The female also spent some time picking individual pieces of gravel and placing them in just the right spot.

Both birds look to be the adults that have bred successfully for the last two years, the male’s ring just about visible on its left leg in the image below. The quality of this screen grab isn’t up to much, but if anyone manages to read the lettering on the ring we’ll be able to discover his origins.

Reports of three birds over Norwood allotments, including two birds talon grappling, sounds like territorial behaviour and a possible attempt to establish a new pair around Sheffield. Definitely one to watch!

The webcam will be viewable via http://efm.dept.shef.ac.uk/peregrine/ and a second, with a view across the ledge to the platform, should soon be up and running too. Much to look forward to in the weeks ahead. Fingers firmly crossed for another season of breeding success.

And the Resolution? To try to keep regular updates on the blog through the breeding season. Easier said than done, but isn’t that what resolutions are all about?! reblogged from Sheffield Peregrines.wordpress.com

Headlines like these have become increasingly common in recent years. They refer to the results of the PACE trial, a government-funded study into the safety and efficacy of graded exercise and cognitive behavioural therapies (GET/CBT) as treatments for ME.

The trial ostensibly showed that structured exercise can be used to treat ME, but ME specialists condemn the research as flawed, misleading and potentially harmful. No one denies the importance of patients remaining as active as possible within safe limits; the question is whether goal-focussed programmes that push against those limits are helpful or harmful when it comes to ME.

1. PACE promotes the theory that ME has a primarily psychosocial cause

Despite substantial evidence for the physical basis of ME, psychiatrists behind the PACE trials believe it to be a form of personality disorder perpetuated by psychosocial factors.

Results of PACE seem very different to patient experiences of graded exercise. Surveys of patients found the majority claim to have had no benefit from exercise or to have wound up sicker, yet the PACE trial claimed 60% of participants improved.

Physical exertion has been repeatedly shown to have a measurable effect on patients with ME, causing muscle abnormalities, neurocognitive impairments, decreased motor speed, poor reaction times, reduced peak flow and abnormal brain activity. People with ME have a reduced capacity to recover from exertion and this exercise intolerance has a cumulative effect until patients reach a point where their capacity for exertion actually decreases.

The PACE researchers acknowledge that poorly-delivered graded exercise can make patients worse but the UK has very few physiotherapists qualified to deliver specialist care.

3. Patient selection for the PACE trials was extremely controversial

The PACE trials were based upon the Oxford criteria for CFS/ME, which focuses on fatigue as the primary symptom. The focus on idiopathic fatigue means patients with misdiagnosed or co-morbid psychiatric diagnoses (such as depression, anxiety, and somatoform disorders) were not excluded from the trial. All these disorders are known to cause fatigue and to respond to exercise and CBT.

By the PACE researchers’ own reckoning only 67% of patients met the American CDC criteria for CFS and only 51% met the London Criteria which focuses on the exercise-induced fatigue required for diagnosis in the UK. Patients with primary symptoms other than fatigue were excluded from the trial as were children and anyone with severe ME, meaning its results cannot be extrapolated beyond a certain subgroup of patients. This is particularly important as many doctors (and the media) attempt to apply the results universally.

4. Data from the trial has been widely misrepresented

Two forms of assessment were used to measure patients’ fatigue in the trial: subjective patient questionnaires and an objective six-minute walking test. Figures quoted in the press were based upon patient perceptions of fatigue but the extent of perceived improvement was not substantially upheld in physical tests.

At the start of the trial, patients averaged a distance of approximately 300 meters in a six-minute walking test. The authors of the trial proposed a forty-five meter improvement as providing a ‘clinically useful’ outcome. The group that received medical care alone improved by twenty meters while the group that received graded exercise improved by thirty-five. As the graded exercise was in addition to medical care however, the first twenty meters of improvement may be attributed to this, meaning only fifteen meters can be attributed to the exercise itself. Few people would deny that a fifteen meter improvement after a year of therapy is hardly a miracle cure.

The furthest distance completed in the walking test was only half the average distance of a typical healthy pensioner. Fatigue levels were still higher at the end of the trial than for patients with congestive heart failure.

As fatigue is only one of many disabling symptoms of ME, a reduction in fatigue does not necessarily equate to a return to health or improvement in physical and social function. No data about patient recovery or deterioration has yet been published, so media claims that patients were ‘cured’ or returned to ‘normal’ following the trial are unsupported. There is no evidence that patients came off benefits or returned to work as a result of the trial, in fact receipt of benefits was found to have increased. Given ME is characterised by periods of remission and relapse it will be interesting to see whether improvements are sustained in the longer-term.